I haven’t shared my IF ONLY FOR ONE’s in awhile and two days in a row BAM! This story took Place Thursday May 7th 2015. I have to start with a little foreshadowing. I was getting ready for the day and I decided to wear a new top I purchased a few weeks ago. It is made of thin tshirt like material so poking sticking a pin through it would surely leave an obivous the next time I wear it. Out of habit I went to stick my lapel GRAY RIBBON and paused thinking well its a new shirt and hmmm what else could I wear for my gray today, my bracelet but you can’t see the ribbon . STOP! I said “SELF” its a shirt not a BRAIN TUMOR. It’s a tiny hole in a t-shirt replaceable not a massive slice in my head. No second guessing now and WHALA I put the ribbon in my shirt. ( seems trivial but stick with me)
Now to take on my day. I ran a bunch of errands and on my way home I stopped at a FEDX print store so I could make some copies of the GRAY MATTERS FOUNDATION poster “Wear your Gray in May” . I have my flash drive in hand and ask for help. A nice man named Bill walks me over to self serve and this is where it happened. We chatted for a bit with small talk. He has a PA accent. My husband is from PA so that opened the door for conversation. I ask what brought him to AZ and that is all it took. Next he walks me through the steps to get the file opened and on the screen. Once the first copy was made the BT conversation happens. I ask did he know it was BRAIN TUMOR AWARENESS month. NO. He reads the poster and it opened the door for even more questions. I share how I started this foundation and what I do and my passion for the cause because having experienced it first hand I KNOW! what it feels like to need that encouragement and support. Then it happens ……He gives me that look and Asks YOU???? Yes me I reply. He went on to say how lucky, blessed I am. And then the look that breaks my heart. That tone I have come to know way to often, that moment when I sense he knows more about brain tumors than he cared to EVER! He gives a BIG SIGH Really? and with the heart broken look went on to share because—-”my brother in law was diagnosed and died in less than a year” Before another word was said those horrible three letters entered our conversation. GBM ( in my mind DANG IT! ) I am so sorry Bill. He shared how tough it was to watch but how wonderful his sister in law handled it. We chatted a little bit more and I shared more about the special details of May and wearing gray. Oh my goodness it occurred to me Bill is my one today. I shared my business card with Bill and apologized I didn’t have a brochure but please keep take a poster. I offered for him to give his sister the card. I shared if she was open to it I would be happy to reach out to her . WAIT I was thinking & It hit me. I am wearing my special ribbon the one that is going to leave a small reminder . I only have one of these ribbons but that’s ok they need it. Today he & his sister are my ” if only for one”. I proceed to remove my GRAY RIBBON so I can gift it. I asked Bill ” would your sister wear a ribbon if she had one?” OF COURSE. Well give this to her. It’s a special ribbon because it has a little angel on it and it represents those who fought a good fight. I always tell my buddies I am a voice for those who no longer have one. She can wear this and be reminded he is not forgotten and someone is a voice for him in this cause. He will not be forgotten EVER. Bill said he just couldn’t take the ribbon. I shared with Bill I knew this was for his family because I almost didn’t wear it today and now he shares his story. It for sure is meant to be his sisters ribbon. You and your family are “my one” and I was supposed to give this ribbon to you. You just never know the reasons but follow those little nudges.
This story took place June 23rd 2015 the fourth Tuesday of the month. For those who have followed any portion of my journey you know that I have donated my time facilitating a local BRAIN TUMOR SUPPORT GROUP for over 10 years and that the 4th Tuesday is dedicated to this group. I typically schedule nothing all day and I get to the hospital rested and early to meet and greet the families both new and those who have attended for years. I like to be my authentic self. I want to be completely and whole heartedly in the moment so rested is best. Today was no different except for one little change. I have been trying to schedule a brief follow up appointment with a Corporate Brain Buddie and today they could meet me briefly before the group at the hospital. So I stepped out of my normal and scheduled a short meeting before I picked up the parking stickers etc. I had it all planned so I thought. An important piece to this story is each time I drive in town for group I always say a little prayer and ask that all who are supposed to be at group arrive safely. I ask that I have ears to hear those who need to be heard and eyes to see those that need to be seen. I ask to help me be all I was created to be. I want to be a good leader. I know without a doubt I was meant to help the hurting , the sick and yes sometimes dying. I was meant to encourage and share hope. For me I feel without prayer I would not be me. Well I got to the hospital and I text the person I was supposed to meet letting them know that I had arrived. The reply was “I have to cancel” AGAIN. Of course I had 2 choices get upset or live in the moment and be still. I choose the second. So I was quiet and figured well I am early and not in the heat , and not rushing decide to relax before my next stop. As I sat I people watched and then this one couple stood out. I saw this lady and man exiting the doctors office. The wife pushed the hubby in his chair to the side and she walked down the hall and came up and back a couple times. I asked if I could help her find something she said ”actually I am looking for water and there is a fountain but no cups.” Me- hold on I think they might have some in the Dr’s office. I went in the office and sure enough they did. I went one step further and filled it with water from a machine. I walked out and gave it to them. The man who I now know and call Mr. Bernie asked me my name ? ( HE OPENED THE DOOR for conversation and this is where it began,) He said I looked familiar. I asked if he had a brain tumor he said no but began to tell me why he was at the hospital and then our eyes met. He then asked what I do and I told him how I have survived BC and he said I was a true miracle. He told me how he is a retired Chaplain and some of his story about he and his wife. I told him I trained to be a volunteer chaplain after my first surgery and shared some of those stories and maybe that was our connection. His wife just couldn’t believe the connections and sat back and smiled. He looked up and said ” I was a Chaplain for many years in hospitals” Communication is vital and YOU HAVE THE GIFT, me- what do you mean? you know how to do it , You know how to communicate with those who need support , care. Your a good communicator. I scooted down so I could look at him and not over and he asked me Do you know the song “YOU ARE MY SUNSHINE” Me- Oh my goodness do I??? I told him he was going to make me cry I call my son that and my daughter my daughter shine. More importantly I just gave my son a wooden plaque for his birthday a few days ago he turned 26. The plaque said exactly that ” YOU ARE MY SUNSHINE” I shared how I wrote no matter how old you are you will always be my sunshine. Mr. Bernie said that he could tell I was SUNSHINE to those I meet . He asked if I knew the words? I said I believe I do. He said sing it with me. He looked at me and then his wife and with a big smile in the middle of the hospital tears flowing down my face I sang YOU ARE MY SUNSHINE with him. Here is the what I call the “GOD wink” I could have let the appointment that didn’t happen cause frustration and I would have left. I choose to be still. I choose to be in the moment not caught in disappointment , and in that moment I realized I never got stood up I was actually at my destined appointment. On that car ride in to my meeting I prayed and believed I would help all those I was supposed to. Well I DID! and in the process I was blessed before my group even started. Now here is the part that makes the smile even bigger. I chatted with them and walked them to the door to meet their ride. Mr. Bernie shared his father worked with Mr. Jimmie Davis who wrote the song YOU ARE MY SUNSHINE. Mr. Bernie’s father actually helped write the tune for the song. Mr. Bernie is due back for more surgery soon. I gave his wife my card and told them to call me so I could be his sunshine! I will decorate his room and the only gray that will be in there will be GRAY MATTERS! If we are still and in the moment we may just receive the sunshine we need. Today Mr. Bernie was my #ifonlyforone he was my #sunshine
There are times in people’s lives when they hit the abyss. When things look so incredibly bleak and you feel that you will never dig yourself out. Last year I faced the abyss and Lanette, with her kindness and love and infectious spirit helped drag me out of the abyss, here is my story.
Team Gray Matters “without your brain it doesn’t matter” my first tag line and fundraising page for the 2005 NBTF walk. Hard to believe it has been over 10 years. The NBTF now NBTS ” AZ” Angel Adventure walk was originally formed with volunteers from Standard Insurance, their Manager Sue Swift, fellow Standard employees and myself. We worked with then NBTF to create a successful walk for Arizona. Take a minute to read my first fundraising page http://ow.ly/D4aS3009Gbz
I met a lady while volunteering on the Pediatric Ride for kids. This was over 10 years now. She called me and asked if I spoke to families with adults that had brain tumors. Funny, I worked more with families of adult victims than children at that time. I said of course and the story began. She asked if I would reach out to her hair dresser who was just diagnosed with a brain tumor. I of course again said yes got the details and go with me as I tell you about Jack. I remember calling and playing phone tag a few times and then finally connecting. We talked and he shared he was going to have surgery and was concerned about the outcome , his family and how his partner of over 20 years would cope. I did what I do best and that was try to reassure him that he would not be alone and I would stay in touch with his family and encourage them every step of the way. Unfortunately I did not get to meet Jack before his first surgery and after coming home he had a seizure and endured his journey with a GBM blind. I did get to meet him when he was in the hospital again. We tried to make the best of it and he had fun joking with me each time I entered the room because he said he could smell me. He said he smelled the cookie. ( I wear vanilla) I became what I consider pretty close to the family attending some holiday events and was invited to scrapbook parties his daughter in law hosted. We were brain buddies. Sadly like many of the GBM diagnosis his story took a tragic turn. I found that I became even closer to John his partner and still to this day keep in touch. It wouldn’t be until Jack’s parting that I would learn more about him through John. John at the celebrate life did something that I had never seen before. He had the standard photos sharing the history from childhood to present but he made it more personal having tables with tangibles. He had the things that friends would remember most about Jack. Jack had owned several salons through the years and had many clients. They knew him by the little things that gave him his unique character. The before tumor and after tumor things Jack did & liked. The cologne he was known for wearing, his favorite food, drink etc. He had his own paper it was custom made with his name on it. He had his favorite soap. He had the back scratcher that he would always ask you to use if you stopped by for a visit. His favorite candy. You were his best friend if you use the back scratcher and could reach the spot he needed scratched. He even had Jacks cell phone on the table. I am told Jack was ALWAYS tied to his phone. There was brushes and combs and even the very blow dryer he used with his clients. Many were shedding tears when they walked past and just held it close to them. I just kept thinking of all the services I had been to and how I never walked away knowing anyone like this. What a really cool rememberance. ( The items I mentioned were just a few there were more) It was this remembrance, those items set out to create vivid memories that would later start what I would call my JACK BASKETS. This was the idea that sparked my Gray Matters Basket events. What better way to remember and honor those than to describe them with items you can touch , smell , see. I did not know him pre tumor but John sure helped me through sharing Jacks legacy creating a visual. John shared an amazing life lived. Those who knew Jack had a visual rememberance of the good times not the beast that stole our friend. I could go on but today this is Jack, Forever Missed by Many and never forgotten because friends don’t end.
Today I want you to know about my friend Matthew Fullerton. He will celebrate 29 years surviving GBM. I think His tells his survival story best here is that link https://virtualtrials.com/survivematt.cfm I met Matthew at an event in 2000 but would not really become friends until attending the Florida Brain Tumor conferences EVERY YEAR from 2001 on. Matthew is the true definition of MEMORYMAKER . Matt took photo’s at all our events and if you didn’t realize it you would when you got to see his masterpieces aka his SCRAP BOOKS. He took the photos and created true memorymakingmoments that will last a lifetime. It was so awesome because he would create online photo books and would bring the hard copy photo albums at the next event for all of us to see. It was the best. Some people ask “Isn’t it sad to look at those books and see so many gone?” I say NOPE! just the opposite What a blessing to have those books to remember LIFE LIVED the good times. Matt always makes you laugh and listens when you need to cry but don’t be fooled he will tell you like it is ( ask any of those who spend a little time with him ). Watch out ! Mess with those he cares about , specifically his brain buddies and your TOAST!!!! I wanted you to know about Matt because in the midst of what could have taken him down he has used it to encourage many all over the world. To know Matthew is to love Matthew. I am so glad to call him my friend. & he says it best KEEP ON KEEPING ON
Today we want to tell you about one of our #CorporateGMFbrainbuddies. We met @GregTrevesio and his company @FitnessInstituteofArrowhead when he came highly recommended as a personal trainor by our doctor. I hired him as a personal trainor for my son. We have known Greg for just about ten years. Over the ten years I also became a client. I was most happy with the extra time he took to understand the special needs I have because of all the brain surgeries. He did not put me in a box he created a plan specifically for me and we worked together on wellness . During that time of working together as a client Greg became one of our biggest supporters. His company sponsored our Foundation tshirt several times. Greg believed in what we were doing and wanted to help. He has participated in our GRAY IN MAY events. During May he hangs our posters, hands out our ribbons and tri folds. The Fitness Institute has even supported and attended our annual Dbacks fundraiser since it started. Today we would like to give an extra shout out to our brain buddie. If you live near the ARROWHEAD area 59th ave & 101 we hope you will consider supporting someone who supports us. It’s great to know that we have a corporate voice sharing with others #BRAINTUMORSSTINK that’s what they think.
Baby Carson is the youngst #LILGMFbrainbuddie. His family and I connected the very first time we met. The story started when I watched CBS5 news and their pay it forward story. I then reached out to the family and started speaking with Carsons Uncle Nick. I shared how GMFoundation mission is to encourage and educate. From that call we set up a day to meet Carson, his daddy Bubba and the grandpartents at the hospital. Like a typical graymatters visit I planned to decorate the room and share some Brain Tumor educational information which I would leave with them. I learned Carson is a Spiderman fan so I went on my mission to purchase SPIDEY decor. All the fun set aside this was not easy. Watching this baby fight for his life was something I had only read others do. I have seen photos on social media and supported and encouraged those living it but this was up close and personal, This just got REAL. It’s great to support the walks and the rides and all the great work the other NPO’s are doing for research because I get to meet these kids in person at the events. It is a whole different scene when you are on the cancer floor and see these little ones in bed sick. I visited just about everyday once I met this family. This journey was now part of me, I lived it. I held Carson, played with him, I helped clean him, & myself after being pooped on while holding him. POOP AWAY! I’d say just live little dude just live. I was there when the doctors talked to the family, WOW ! I still say in ANY environment there are AWESOME communicators and there are those who need to take communication 101. There were a few who needed some 101. It made the family very happy when I was able to have some of my friends in the brain tumor world aka experts to help explain some of the information that was being given to them so they could make educated decisions. This part of my journey CONFIRMED that every person especially a parent with limited resources deserves to understand what the choices are. They should not just be given a piece of paper and told to read and let me know what you want to do. TGEN and NBTS were awesome resources in helping this family become better educated to choose their next steps. Carson is not my child but my brain buddies ALL of them are my family and this peds thing was a whole new walk. If you have been a fan or a friend on my social media you knew about Carson. You knew when it was good, when things were bad, or the day to day. My biggest lesson on the BABY CAR journey was this: Hope never grows old & it never starts to young. Carson was diagnosed with Medullablastoma and was not expected do very well. He was dischared the first part of the year with clean scans and no sign of it spreading to the spine. No more chemo. Oh how I think back to when I watched him get so sick from all the treatments and infections in his feeding tubes. I would stay late to rock him to sleep or arrive early to play with him and his toys before he was overtired with all the therapy. I am so GREATFUL for knowing Carson and his family. He may be the youngest but I have learned so much from such a little dude! I spoke to him just last night and he says Hi auntie lanette. My heart melts and is for ever changed. I will never forget watching him leave that hospital. I cried happy tears. I am awaiting his 3rd birthday in a few weeks when I get to see him again. I am told he has a full head of hair.
Kris is her name and Tom was her husband. I never met Tom in person but I did through Kris. You see a loved one can always be kept alive in memory if you share their story. I was a new attendee to the Florida Brain Tumor Association and had to learn who was who. Go with me it was like the HIGH SCHOOL Days of the brain tumor group. Finding out who the cool kids were. NOTE: I was not a popular kid in highschool I am the same girl just a good friend. I had no idea attending the FBTA events would be a life changer. My life is forever changed because of my brain buddies in Florida.
Kris, she is a caregiver. Oh yes she cared for her Tom and how she loves him so. Tom had a brain tumor and it was the GBM we all hate. I met her after her Thomas pysically died but she has kept his life lived and memory very much alive. She has been his voice and teaches others to do the same. I remember when we became friends It was like yesterday. My first time meeting her was Jan. 2001. I know this because My hubby and I attended the conference pre-honeymoon. We got married that week and attended the conference that weekend. Today I want to tell you about Kris. It wouldn’t be until years of attending FBTA and the get togethers in between that I would learn how I was given a living angel to see me through this journey with Brain Tumors. I am not the only one who feels this way just ask those who know her. So the first year I met her everyone was kind. HA! the next year was my initiation. Oh my then our trip to WASHINGTON DC GRAY in MAY . She led the way and BOOM she made some things move. Ok that 2nd year my initiation year in FL Kris and the crew let me call our friend Murray MURPHY the whole weekend yes my sort of initiation. We still laugh about that today. I remember the day I was introduced to Thomas. We were at the after party only a few were invited ( I felt special ok I am special and not ashamed to say it! yep yep ) Kris was sitting off to the side clinging to this frame. I had seen her caring it around and then she asked. Do you want to see my Tom. Of course I replied. I can still see her face, her tears but the joy of holding him. It was just a photo but it was her husband. There is something about telling the story of someone you love. There is even more passion behind the voice when they were taken to soon. Kris was this person. She was part of a cause that was powered by LOVE but she was determined to never let the thief win and trap her from life. Kris is powerful in business. Kris is an amazing mom , wife and friend. Kris is one of the few who became part of a cause and never walked away. Death couldn’t make her run. Death caused her to become more devoted and a reason to never loose voice. Kris is my friend. She believes the best can happen. She has held and loved the best and was left with it stolen. The beauty of the brain buddie world is we love. To know Kris is to love Kris. If you are her friend then you are loved. Kris taught me that when we unite as a group we can lift. We have learned only a few understand but brain tumor families are a different family. Once your in well only you can choose to walk away but most find a spot and hang on. Caregivers move mountains. I could write a book instead of a blog but Kris knows how I feel. We have lost so many of those we love. We have cried together, Oh how we have laughed. We never forget! We will just grow older together and always reminisce. FRIENDS NEVER EVER END!
I attended my very first conference in California hosted by the National Brain Tumor Foundation in 2000. ( NBTF is now NBTS they merged a few years back) It was a whole weekend filled of information. I arrived on Friday morning and Friday evening it began. They had an introduction and explanation of the next few days. I was filled with anticipation. I was so excited to learn I could purchase the recorded sessions on cassette at the end of each break out. This was all new to me. This was perfect but difficult to decide which session to go to next. I purchased every session so I could take it home to share and relisten. Funny right I was purchasing cassettes. So much took place that weekend but one session stands out. There was this drug researchers were working hard on it was called AVASTIN. I couldn’t write enough infromation down. I couldn’t grab enough handouts. OMG this was true information overload and I wanted more. The biggest impact the weekend had was meeting “other survivors”. I was not the only one. They had fresh scars , some wore bandanas. Some had trouble walking and others trouble talking. It was also a little scary because I didn’t suffer some of the side effects I was seeing others suffering from. I was there alone and so many others had their caregivers WOW this was so much to take in. It was all the introductions the new friends I can still remember the faces not the names. I remember the dinner it was a fun event they had on Saturday night. They assigned seats and you were encouraged to connect with others. It was the first time I met David M Bailey and Matthew Fullerton. It is the first time I heard david perform and I was so moved by his song ”ONE MORE DAY”. After the DMB concert I knew that my family had to hear this. This music was proof we were not alone and proof there is HOPE. I bought the CD and even more awesome david autographed it, I was so happy. I can still remember the fun everyone had at the dinner. Who could have predicted that Matthew and David would become two of my best friends. They would be part of the many #memorymakingmoments that would change my life forever over the course of the next 10 years of my #braintumorjourney ( Matthew and I are #BESTIEBRAINBUDDIESFOREVER and our beloved david more about him on another #Lanette’sLittlebits #gograyinmay day. ) During this weekend I just kept saying My family had to expierence this! I just had to let them know we were not the only ones! Then it happened I met Julie. Julie was her name. Julie G. She was diagnosed with the same tumor as my grandma but she was living this made me happy. I never met anyone with the same tumor as my grandma. Honestly I really didn’t know much about brain tumors so this event was educating me REAL FAST! Now Julie and this singer and his best friend are all GBM survivors this is incredible. Julie and I chatted I learned she had two girls ,she was a single mom just like me. Julie was there with her parents so they could try to make sense of this madness. I met them as well. Before the weekend was over Julie and I exchanged contact information and agreed to stay intouch and to maybe meet up and attend another conference. The weekend went by so fast. I went home and the story goes on but it is my brain buddie Julie that I want to stay focused on. Keep in mind this was just about 18 years ago and social media was not what it is today. ANCIENT Aol was the “THING”. You know the “YOU GOT MAIL” I was just learning how to do the whole email thing and I would sign on in hopes to chat with JULIE. We stayed in touch and then I noticed about a year into becoming friends I didn’t hear from her. No more YOU GOT MAIL from Julie. No more seeing her name off to the side letting me know she was online. This is when I learned the value of always getting a caregiver or loved ones contact information just incase. It still didn’t sink in. I was new to all this brain tumor stuff. Life is Life and the not communicating I just figured we get busy and move on. I received my quarterly NBTF snail mailed newsletter. Flipped through and then it happened. The head line read something like this: Two girls The daughters in memory of their mother Julie G raised over 10k hosting a fundraiser for research. OMG it was Julie. Her daughters. My friend. No wonder no emails. Oh no my heart hurt I cried. I shared with my then boyfriend now husband. My heart new this already but my mind once again got a reality check LIFE IS SHORT. Oh and that David M Bailey song ONE MORE DAY it meant even more to me now. BRAIN TUMOR AWARENESS : Her name was Julie and she died, I cried and life got real. I could be a Julie. Ok so my tumor was not GBM and I was not my GMA but wait they tell me my tumor diagnosis can turn ugly like GMA’s. So today Her name was Julie and I will never forget her. If you are on this journey you understand. That’s all.